The Christmas Gift

Christmas has now come and gone and this is the first one post transplant. It has been a long road and I finally found out just how far. My wife and I were opening presents from family and friends when I came across a gift from my eldest sister. It was a tin man ornament. It looked sort of old and weathered which confused me at first. With this gift was a note which reads

"I made this ornament when my first born was a baby, so it's about 35 yrs old. Who'd have ever thought it would carry such significance in our family after all these years! It's so wonderful that your wish 'If I only had a heart' has finally come true, tho like the original tin man, we all know you have had the biggest heart - in your spirit and how you live your life. You, Baby Brother, will always be an inspiration to me."

After a short bout of tears, my wife and I looked at each other with the same expression on our faces. The look of understanding, just a bit better, than we had before. The second chance I have been granted is only worth what I make it. My transplant experience has been less than my favorite thus far and I have found myself on the pity train more than once. Support like this gives me the strength to work at my recovery and understanding that this gift has effected more than just me makes it all the more precious.

Be good to each other,
Tin Man

Don't Let Wellness Get in the Way

The transplant process is a double edged sword. Each side has its protocol to provide the best opportunity for success. Each case is unique and there are no guarantees or absolutes but these guidelines are based on past experiences. On the front side of transplant, one should stay as healthy as possible and follow all the directions regarding meds, diet and appointments provided by the transplant team.

On the post side of transplant there is a much different group of meds and a whole new protocol. Your opportunity to recover is very realistic, no matter how impossible it may seem. Even though there are new "issues" to deal with, such as diabetes, insulin, odd side effects, changes in long practiced habits like Caffeine, or even favorite foods. As you continue to "stay within the lines" with the visits, meds, exercise and diet, you will notice things getting better and easier. The word normal starts to show itself in the distance but it is spelled differently or in a new font. This will become the "New Normal" .


Maintaining your new reality and health is a new challenge that will require consistent adherence to change. That may sound like an oxymoron, but it is a good way of describing it. As you get further from the transplant date things will be changing. With your new organ functioning properly your meds may be reduced, some side effects will subside, you begin to feel better, appointments become less frequent and meds are reduced. This is, by no means, the time to relax any of the needed routines that remain. There are meds you will be on for the rest of your life and taking them exactly as prescribed is as important on day 4000 as it was on day 4 post transplant. The same goes for the dietary and exercise regimens. You need to maintain vigilance to continue to enjoy the second chance you have been granted. Never become complacent with your success.

Be good to each other,
Tin Man

Kuala Lumpur?

Whilst whiling away the hours in my forced sedation, the city of Kuala Lumpur kept coming up in my dreams. To answer the obvious, I have never been there or even to that hemisphere yet the city was prominent and recurring in my dreams.

After waking I asked my wife a few questions about what was "real" and what was not. Questions like "are we in Kuala Lumpur?", "did I get arrested in Kuala Lumpur for running stolen boats?" Was I at a rehab facility in Kuala Lumpur where I wass recouping from my injuries?" "Why was I in Kuala Lumpur with family members and what were they eating on the beach?" Was I stuck in an Italian restaurant in , you guessed it, Kuala Lumpur, waiting for the owners to finish up their wine ????"""

All of this was dream but I did not understand the reason for the common thread of Kuala Lumpur. When I was finally moved to the tele floor, I recognized my nurse's name since she had been my nurse on previous occasions. My wife happened to ask her where she was from since her name was so unusual. Hold onto your hat…. She grew up in Malaysia, where one would find Kuala Lumpur. I got a chill that lasted the next couple days….

Be good to each other,
JJ

And there was much rejoicing…..

In my last entry I had just received the call notifying me that a match had been found for my needed heart. Well, suffice to say, things went well and I am now the recipient of the greatest gift. A second chance.. The surgeries went off like clock work and I was placed in a state of sedation for some 14 days to keep me safe from myself. My family made trip after trip to see me awake but most of them still did not get to.

I wanted to take this opportunity to thank everyone for their thoughts, prayers and well wishes. It is thru your strength and support that any of this is possible.

I especially want to thank my family members for the support they provided my wife and the great attitude that carried them all thru this.


Finally, I would like to thank the donor, whomever you are. None of this happens if that person does not live in charity and as a registered donor. I have truly been blessed with a miracle.


Be good to each other,
JJ

The Call

A little over an hour ago I was informed that the heart I have been waiting over 3 years for has finally been found. Dreams do come true and prayers do work. I hope to be up and blogging more info with a new heart very soon.
Be good to each other,
JJ

And you thought the dentist sucked

As I sit here in my hospital bed for the 8th day in a row and the 17th of the last 20 days I dream of being in the dentist chair having a root canal. It would be so much nicer than the interminable minutes spent in this bed working desperately hard to make it seem OK. Each morning I wake up and feel a little worse than the previous morning. I spend the first 40 minutes or so trying to mentally prepare myself for the 12 to 14 hours that follow. I need to convince myself that sitting in this bed and possibly walking a few laps of the ward will be less tiring , more comfortable or somehow more exciting than it was yesterday. I am trapped in a failing body and have to try to quell the urge to rip out the tubes or just try to sleep the time away. At times it seems that there is nothing outside of my room and the clicking of the machine that pumps my medication in and the alarms of the machines that monitor me. The cocktail is becoming too potent and my 40 minutes begins to stretch into hours. The process is beginning to remind me of one of my favorite Metallica songs. It is about a war veteran who suffers in silence within his own mind as he lays in a hospital bed with no way to communicate his suffering or horror of feeling trapped. I am not quite that bad but the image does enter my head.
As I write this and the medications start to take effect, my mood calms and I can see light at the end of the tunnel again. Hope springs eternal so never give up!
Be good to each other,
JJ

I'm Fine...

There are several answers that one may give to the question "how are you feeling/doing?". Swimmingly, fabulous, any better and I would be writing show tunes, logi, good and fine are amongst the possible responses. Each have their own charm and dispense with the question efficiently but one stands out in raising the hair on the neck of a caregiver or concerned individual. FINE!! It is, after all, a four letter word. It has been brought to my attention as a patient waiting for a heart transplant, this is probably not the correct response to a spouse/Dr/nurse/health care assistant/coordinator or social worker asking the question, especially if it is not true. George Carlin did a bit about the word fine that still rings in my ears. "a comb is fine, a line is fine, but people are not fine!!" he would shout in his gravelly voice.
During this journey, as the baselines are erased and lowered as quickly as they can be drawn, I have redefined "fine" several times and now have reached a point of confusion.

How am I really doing?

I have just spent a few days in the hospital in response to worsening symptoms of heart failure. I was started and sent home on a continuous IV of a medication that will help my heart beat stronger while the wait continues. This medication has several side effects and can be a panacea or a poison. It has caused me to become very aware of "how I am feeling" at all times. The symptoms have become mixed between side-effect and symptom. Add anxiety to the mix and I have real trouble with that question. I guess the best I can do for now is repeat what my father has said hundreds of times in response to that question.

"I got out of bed this morning"

Be good to each other,

JJ